Cleft lip and cleft palate

Diagnosis

Most cases of cleft lip and cleft palate are noticed right away at birth and don't require special tests for diagnosis. Increasingly, cleft lip and cleft palate are seen on ultrasound before the baby is born.

Ultrasound before birth

A prenatal ultrasound is a test that uses sound waves to create pictures of the developing fetus. When analyzing the pictures, a doctor may detect a difference in the facial structures.

Cleft lip may be detected with ultrasound beginning around the 13th week of pregnancy. As the fetus continues developing, it may be easier to accurately diagnose a cleft lip. Cleft palate that occurs alone is more difficult to see using ultrasound.

If prenatal ultrasound shows a cleft, your doctor may offer a procedure to take a sample of amniotic fluid from your uterus (amniocentesis). The fluid test may indicate that the fetus has inherited a genetic syndrome that may cause other birth defects. However, most often the cause of cleft lip and cleft palate is unknown.

Treatment

The goals of treatment for cleft lip and cleft palate are to improve the child's ability to eat, speak and hear normally and to achieve a normal facial appearance.

Care for children with cleft lip and cleft palate often involves a team of doctors and experts, including:

• Surgeons who specialize in cleft repair, such as plastic surgeons or ENTs
• Oral surgeons
• Ear, nose and throat doctors (ENTs, also called otorhinolaryngologists)
• Pediatricians
• Pediatric dentists
• Orthodontists
• Nurses
• Auditory or hearing specialists
• Speech therapists
• Genetic counselors
• Social workers
• Psychologists

Treatment involves surgery to repair the defect and therapies to improve any related conditions.

Surgery

Surgery to correct cleft lip and palate is based on your child's particular situation. Following the initial cleft repair, your doctor may recommend follow-up surgeries to improve speech or improve the appearance of the lip and nose.

Surgeries typically are performed in this order:

• Cleft lip repair — within the first 3 to 6 months of age
• Cleft palate repair — by the age of 12 months, or earlier if possible
• Follow-up surgeries — between age 2 and late teen years

Cleft lip and palate surgery takes place in a hospital. Your child will receive a general anesthetic, so he or she won't feel pain or be awake during surgery. Several different surgical techniques and procedures are used to repair cleft lip and palate, reconstruct the affected areas, and prevent or treat related complications.

In general, procedures may include:

• Cleft lip repair. To close the separation in the lip, the surgeon makes incisions on both sides of the cleft and creates flaps of tissue. The flaps are then stitched together, including the lip muscles. The repair should create a more normal lip appearance, structure and function. Initial nasal repair, if needed, is usually done at the same time.
• Cleft palate repair. Various procedures may be used to close the separation and rebuild the roof of the mouth (hard and soft palate), depending on your child's situation. The surgeon makes incisions on both sides of the cleft and repositions the tissue and muscles. The repair is then stitched closed.
• Ear tube surgery. For children with cleft palate, ear tubes may be placed to reduce the risk of chronic ear fluid, which can lead to hearing loss. Ear tube surgery involves placing tiny bobbin-shaped tubes in the eardrum to create an opening to prevent fluid buildup.
• Surgery to reconstruct appearance. Additional surgeries may be needed to improve the appearance of the mouth, lip and nose.

Surgery can significantly improve your child's appearance, quality of life, and ability to eat, breathe and talk. Possible risks of surgery include bleeding, infection, poor healing, widening or elevation of scars, and temporary or permanent damage to nerves, blood vessels or other structures.

Treatment for complications

Your doctor may recommend additional treatment for complications caused by cleft lip and cleft palate. Examples include:

• Feeding strategies, such as using a special bottle nipple or feeder
• Speech therapy to correct difficulty with speaking
• Orthodontic adjustments to the teeth and bite, such as having braces
• Monitoring by a pediatric dentist for tooth development and oral health from an early age
• Monitoring and treatment for ear infections, which may include ear tubes
• Hearing aids or other assistive devices for a child with hearing loss
• Therapy with a psychologist to help the child cope with the stress of repeated medical procedures or other concerns

Coping and support

No one expects to have a baby with a birth defect. When the excitement of new life is met with the stress of discovering that your baby has a cleft lip or cleft palate, the experience can be emotionally demanding for the entire family.

For parents and family

When welcoming a baby with cleft lip and cleft palate into your family, keep these coping tips in mind:

• Don't blame yourself. Focus your energy on supporting and helping your child.
• Acknowledge your emotions. It's completely normal to feel sad, overwhelmed and upset.
• Find support. Your hospital social worker can help you find community and financial resources and education.

For your child

You can support your child in many ways:

• Focus on your child as a person, not on the cleft.
• Point out positive qualities in others that don't involve physical appearance.
• Help your child gain confidence by allowing him or her to make decisions.
• Encourage confident body language, such as smiling and holding the head up with shoulders back.
• Keep the lines of communication open. If teasing or self-esteem issues arise at school, this can help your child feel safe in talking with you about it, so you can help address these issues.

Preparing for your appointment

If your child was diagnosed with cleft lip, cleft palate or both, you'll be referred to specialists who can help create a treatment plan for your child. Here's some information to help you get ready and what to expect from your doctor.

What you can do

Before your appointment:

• Find out any pre-appointment restrictions. At the time you make the appointment, ask if there's anything you need to do in advance, such as restrict your baby's diet.
• Make a list of any signs or symptoms your baby is experiencing, including any that may seem unrelated to the reason for the appointment.
• Consider taking a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
• Make a list of questions to ask your doctor. List your questions from most important to least important in case time runs out.

Some questions to ask your doctor may include:

• Does my baby have a cleft lip, cleft palate or both?
• What caused my baby's cleft lip or cleft palate?
• What tests does my baby need?
• What is the best treatment plan?
• What are the alternatives to the treatment approach that you're suggesting?
• Are there any restrictions that my baby needs to follow?
• Should my baby see a specialist?
• Are there brochures or other printed material that I can have? What websites do you recommend?
• If I choose to have more children, is there a chance they may also have cleft lip or cleft palate?

Don't hesitate to ask other questions.

What to expect from your doctor

Your doctor is likely to ask you a number of questions, such as:

• Does your family have a history of cleft lip and cleft palate?
• Does your baby have problems while feeding, such as gagging or having milk come back up through the nose?
• Does your baby experience any symptoms that worry you?
• What, if anything, seems to improve your baby's symptoms?
• What, if anything, appears to worsen your baby's symptoms?

Preparing and anticipating questions will help you make the most of your appointment time and allow you to cover other points you want to address.